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At genetic risk for ALS or FTD?
You are not alone!

End the Legacy is a community organization led by and for people and families affected by genetic risk for ALS and FTD. Together, we navigate uncertainty and work toward a future free of both diseases.

Connect

Meet others who understand.

Join community meetings, peer-support conversations, and online groups.

Find Community

Learn

Explore clear, accessible information about genetic risk, care, and opportunities to participate.

Explore Resources

Research

Explore studies and learn how ETL brings community priorities into research through participation and collaboration.

View Research

Partner with ETL

Are you a researcher, clinician, funder, community organization, or other potential collaborator? We welcome thoughtful partnerships that advance support, education, research, and advocacy for people and families affected by genetic ALS and FTD.

Email us at info@endthelegacy.org

What's Happening

Update on Crispr For Genetic ALS /FTD

November 17th 9am Pacific

Hear from Arbor Bio on their approach to Crispr for genetic ALS and FTD

Sign Up

Speak With a Genetic Counselor

January 4 2027

Learn about what genetic testing is and the importance of genetic counseling from a Licensed Genetic Counselor

Sign Up Here

Early Career Development Award

11/12/2026

To support a career interest in Genetic ALS / FTD Care or Research. Apply by 12/12/2026

Learn More Here
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